A very late, Happy 2019!

We seem to be racing through the new year! I meant to write a post wishing everyone a Happy New Year and thanking you all for your support in 2018! Is it too late to do that now?…..it’s never too late!

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Thanks so much to everyone who supported us during 2018, it is down to all you lovely people that Zach is able make a contribution to the working world. The Spectrum of Misconception got off to a flying start with the wonderful Christmas cards that the very talented Laura Dixon illustrated for us. We sold lots more that we expected and although we had issues with things taking longer than expected and some of the packaging we had purchased not being very strong our customers were happy with the product.

We are learning lessons along the way, we are looking at new packaging and realise that we need to start preparing for Christmas in the Summer! This year we hope to have a few products available at Christmas time…watch this space!

Just before Christmas Laura told us she needed to concentrate on her course work for her Fine Art degree which is entirely understandable, we were disappointed and the search for a new artist started.

Thanks to everyone who suggested someone who maybe able to help us.

It was a bit of a grey Saturday in early January, John and I had a coffee in Hertford after a bit of shopping, called into the Museum to look at an exhibition and then when walking past Courtyard Arts I saw there was a display of young artists work on there. I had to twist John’s arm a bit but in we went.

We worked our way around the room looking at all the art, it was all good. We came to the last but one display and I knew that the artist of this work was just who we were looking for!

I made sure to get the artists details down by taking 110 photos of her bio and set off for home with my fingers tightly crossed.

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I’m not sure whether it was because I crossed my fingers but Lauren was interested in our Enterprise and we planned a meeting.

Lauren is the final year of a Fine Art Foundation Degree. She has loved art from a young age, starting with paint by numbers but using her own paints! Lauren’s main interest is digital art which she uses a tablet for. She is excited about where her art work can take her and we are very excited to have her on our team.

 

We can’t wait for her to get started on new ideas we have for Spectrum of Misconception!

Another good thing has happened, after approximately two long years John and I have been appointed Zach’s Welfare Deputies. This is a complicated process but so necessary for Zach’s ongoing welfare that we have it.

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A Deputy is someone who is appointed by the Court of Protection to act in the best interests and make decisions of someone who lacks capacity to make decisions themselves.

Welfare Deputies can make decisions regarding care, housing, medical treatment.

Very often people do not apply for Welfare Deputyship until something has gone wrong for the person that they care for.

We have had the expert advice of Belinda Blank an independent advocate at  advocacyandsupport.co.uk email: info@advocacyandsupport.co.uk who signposted us to a top Solicitor in Alex Rook of Irwin Mitchell. In our case our reason for applying for Deputyship is that we cannot afford to let things go wrong for Zach so with this we are his voice and we can ensure that his life reflects what we know will be best for him and make him happy.

There is at present a campaign underway which is trying to get the law changed. A group of parents want to change the law to stop the marginalisation of parents after their children turn 18. They want to end rules under the Mental Capacity Act that see’s parents shut out of key decisions.

The Act says that when someone with learning disabilities reaches the age of 18 the decisions about that persons life are then taken by Social Workers.

Rightly the campaigners want the parents to continue to have the final say on the welfare of the person who they know better than anyone!

To find out more about the campaign follow this link https://www.crowdjustice.com/case/3forall

Belinda Blank runs Seminars for Parents, Carers and Professionals, her next is called Transition to Adult Life and runs on the 27th February in Central London. Cost is £15 which includes Lunch. Please find a link below.

Housing flier Feb 19

 

 

 

 

 

 

 

 

 

A New Years Tale

I hope that everyone enjoyed a Merry Christmas or at least got through it unscathed. For those who have a family member who has autism who does not enjoy all the changes and sensory stimulation Christmas brings with it, it can be a difficult and isolating time.

Everybody else seems to be having fun with family and friends and that is very tough.

We had a blissful run, Christmas Eve, Day and Boxing Day when Zach was happy and calm. He really likes the three of us to be together, relaxed, happy and smiling.

 

Normal service has been resumed though and we are back on the roller-coaster which is autism.

As the New Year approaches we have been asked on numerous occasions what we will be doing on New Years Eve.

Its a good question, a conversation opener unless you are asking someone who has an adult child who has autism and no evening support.

When was the last time John and I went out to celebrate New Years Eve? About 23 years ago! That’s a while, I can’t remember where we went or with who….no doubt we will be doing what we usually do on NYE and that is go to bed at the same time we go on every other day of the year.

I was listening to the radio today while pottering about in the kitchen and ‘Our House’ by Madness came on. I can remember that being in the charts at New Year in 1982.

It got me thinking about that particular NYE at a time when I could go out and party.

My parents often went away at New Year and our house was usually party central. On this particular year we hatched a plan which looking back and possibly even at the time was not a great one!

We went to a tiny little club in Stansted Mountfitchett which had a dance floor that held about 5 people as long as they weren’t dancing energetically!

Stansted Mountfitchett is about 45 minutes from Hertford and we had to try to fit about 25 people into 4 cars which was a squeeze!

The initial plan was to see the New Year in at the club and then go back to our house. It shouldn’t have been a surprise that the club was not exactly buzzing and we left within about an hour of arriving.

Fortunately, or so it seemed at the time there was lots of alcohol at our house, we had music and so we all squashed into the cars again and headed back to Hertford.

And so once again we partied at 97 Ware Road, wkept our poor neighbours awake and all drank far too much. The evening was scattered with laughter and dancing, tears and break ups (as were a frequent occurrence when we were young). Some one started the evening with one boyfriend and finished it with another, there was plenty going on.

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Former Wild Child!

We all fell asleep in the early hours of the New Year, bodies in sleeping bags everywhere.

A good friend John, didn’t have a great relationship with alcohol back then and was frequently sick. When we woke up in 1983 we were told that John had been vomiting a good part of the early hours and the toilet in the bathroom was blocked!

Once we were all up and ready to face the day we tried to work out how we would unblock the loo.

John was renowned for fixing things, he always found a way to resolve and get around problems. On one occasion while out on his bike with another friend one of them punctured and when they found that they didn’t have a spare inner tube between them they stuffed the tyre with grass and cycled home 25 miles on it!

John’s plan for our toilet was to run the hose pipe from the outside tap along the length of our landing (which was quite a long way!) and down the toilet, to then turn the tap on at high pressure which was going to unblock the toilet apparently.

So the hose was thrown up into Charlotte’s bedroom window and run through the house and was down the toilet ready to work wonders when someone shouted up the stairs ‘Your Dad and Mum are home’!

‘Course they are’ I shouted back…. ‘they really are’ was the reply!

People began to grab their stuff and head out of the back door while we opened the front door rather slowly!

There was a handy passage down the side of our house which party goers waited in until my parents were safely inside.

I guess you can imagine the reaction, and understandably so! My Dad was very fond of John (hose pipe John) but not especially on that New Years Day.

I couldn’t understand what they were doing coming home to THEIR house on New Years Day! It was all wrong surely, they weren’t meant to be home yet! But due to one of their party being unwell they had come home early and they came home to find a trashed house with a garden hose running through it, that there had been under age drinking and our neighbours were only too happy to inform them of the shenanigans which had gone on into the early hours.

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The face of absolute innocence!

The hose was swiftly removed, not having worked and a plumber was called out (on New Year’s Day, think of the call out cost!) and both my parents were absolutely furious about it all.

Obviously as a home owner myself now, I understand entirely why they were disgruntled to come home to what they found.

What I didn’t understand and still don’t to this day is why they thought it was all my fault! Somehow Sophie, Charlotte and Julia’s part in this party was totally ignored. My boyfriend, Tim who was a vicar’s son and unlike many of my boyfriends my Dad liked, jumped valiantly to my defence but his protests were dismissed and the blame lay firmly with me.

Did we learn our lesson?

Of course not, we always had a party when my parents went away. Fortunately they always warned us the day before they were due to home to give good warning!

As this is just about the end of 2018 I would like to give huge thanks to all my friends for their ongoing support and very generous assistance. It means the world to know we have your support and knowing you are there through all the tough times.

I had hoped to move forward with finding a home which Zach could begin to transition into this year but haven’t achieved it or made any real inroads yet.

I am worried by the lack of housing opportunities in Hertfordshire for young adults who have autism and complex needs.

These are young people who have often tried the short break units the County has for children to give carers a break and the unit has failed to be able to continue due to the complexity of need. The time they have spent away from the family home is so limited.

Transition needs to start early, it will be a long and difficult journey but it must start!

Zach can’t live with us forever because we won’t be here forever, he needs a forever home which is his and tailored to his needs which he can start to very slowly get used to.

Transition cannot be ignored by social services it should be addressed as a priority for those who need it.

At a talk I went to recently about housing opportunities in Hertfordshire almost the opening line was ‘we prefer people to remain in the family home’!

I love Zach with every last ounce of breath in my body and it will break my heart setting him on the journey to a new home but rationally I know it needs to be done.

It would be far more unfair and cruel for Zach to live with us until one or both of us were no longer here!

We have, thanks to the massive generosity of friends and family got our social enterprise off the ground. Thanks so much to everyone who contributed to our crowd funding, and who purchased our cards.

Our artist Laura Dixon has caught our ideas and concepts perfectly and we were all thrilled to see her illustration in print.

 

We sold 1500 cards which exceeded our expectations, Zach helped pack them up and take them to the post office which was at times challenging for him. I hadn’t considered how busy the queues would be in PO’s at Christmas but he coped brilliantly.

Our Spectrum of Misconception website is now live and can be found at http://www.spectrumofmisconception.com. It is a massive learning curve for me so I would be grateful for any feedback. I would also appreciate feedback on our cards, what you liked and what you didn’t if you get a moment.

We have more Spectrum of Misconception products in the pipeline, these are far more niche though so we need a sales strategy…as a nurse of 28 years I never thought I would say that!

All that is left is for me to wish all you wonderful people a smashing 2019, it feels like a massive step into the unknown with so much uncertainty in our own country and the world but look out 2019 I’m coming to get you!

Happy New Year one and all xxx

 

 

 

Harry Specters Chocolate Factory

John had the day off yesterday so we set off to Ely to visit Harry Specters Social Enterprise.

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As we now have a fledgling enterprise we thought it a good idea to support this one by buying their products and seeing how they worked.

Christmas is of course the busiest time of the year for a Chocolate factory and there were boxes of beautifully packed chocolates, pretty chocolate lollies, Bears and Santa’s and more delights everywhere you looked.

We were given a very warm welcome despite the pressures of getting massive corporate orders out and it being black Friday.

We met Rosie in the office and then Mona and Shah came through and chatted to us about how they came to set up this award winning enterprise.

Their son Ash who has autism came up with the name ‘Harry Specters’. Its a great name and very easy to remember. Mona had a job working for the NHS in Mental Health but recognised that Ash would never have the chance to be in employment due to the lack of opportunity for people who have a disability.

Mona who has a lifelong love of chocolate decided to open a chocolate factory as a  social enterprise to give her son and others who have autism the chance which they needed to work.

I feel very strongly that until the chance to work is taken away it is very hard to imagine a life which has little structure or meaningful activity.

There are so many opportunities of work for most of us but imagine if the chance of a job was never there and your life desperately needed some structure and purpose to it. For most of us work serves a number of purposes, not least it pays the mortgage and for all that we need and want but it is also somewhere that we have a role, however high or low we are in the pecking order within the organisation there is something people rely on us to do, we also see our colleagues at work, some of them we may get on very well with, others we might be less keen on but we are usually not isolated and lonely while we are at work.

Harry Specters has now been running for 6 years and their annual turnover is impressive. They will soon be moving into bigger and better premises. They have won recognition for the Enterprise itself but also for the chocolates which they are producing, 22 awards in just four years….These aren’t just any chocolates, they are Harry Specters Chocolates!

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We met the team who were in yesterday while they were on their lunch break, what was really great about it was that it could have been a group of employees anywhere at their lunch break they were all sitting around the table and laughing and joking with one another. Someone had just been and purchased a massive box of Krispy Kreme donuts, was it a special occasion I asked? No, Mona answered they are always buying each other treats.

So after tasting many of the delicious, sophisticated varieties of chocolates, laden with bags of beautiful and luxurious chocolates, many of which Mona just kept adding to our bags so we could taste them,  we made our goodbyes.

We spent more than we intended but lots of friends and family will be receiving a box of these very special chocolates for Christmas.

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These days many products you buy have a label saying ‘made with love’ well this product is made with so many things, love, drive, ambition for those who have autism, self belief that there wouldn’t be a label big enough to cover it.

Today I feel inspired, the drive of this  Mother-Father Team is changing lives and giving self esteem and confidence to a large number of beneficiaries and producing award winning luxury chocolates.

For information on Harry Specters please see their wonderful website http://www.harryschocs.co.uk if you are a chocolate lover you will be very tempted too I am sure.

Christmas card orders are being taken…NOW!

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I am very pleased to let you know we are taking orders for Spectrum of Misconceptions first product!

Our Autism Awareness Christmas card is an original design with a subtle awareness message and a festive greeting.

Cards are £3.99 for a pack of 10 and a flat rate postage of £1.50. Please message me for orders and payment details.

It’s been busy!

One of the things my blog is meant to be about is life, so it is a bit of nuisance when life gets in the way and there aren’t the hours in the day to do some writing!

The last couple of months have been a struggle.  My poor Mum had a nasty fall, resulting in broken bones and a miserable hospital stay.

As a student nurse the ‘Activities of Daily Living’ were what was drummed into us and the importance of ensuring that these needs were met during a hospital stay. It was hard to witness the lack of personal care and the malaise shown towards patients who were elderly. Modern medicine is great but if we are to keep people living for so much longer we surely need to offer services that reflect the interventions used to achieve this. Life must have value to and quality. We cannot treat people as though they are no longer important once they reach a certain age.

Mum is now in a nursing home and my Dad still at home in their flat. They have been married for 69 years and it seems very sad so I am spending a lot of time beetling between them and trying to ensure they see plenty of each other.

While all this has been going on we have had Zach’s 21st Birthday Party. It was so great to see so many people who have been such a big part of our journey all in one place. The look on Zach’s face as more and more people he cares about arrived was a picture. Thanks so much to everyone for coming, you are all fabulous!

 

There has also been plenty of work going on with the ‘Spectrum of Misconception’. We cannot thank you all enough for your generosity and support with our crowd funding. We have the first illustrations for our autism myth busting cards and we also have a great logo and a Christmas card.

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Our logo is based on the triad of impairments which are often referred to in relation to the autistic spectrum.

Triad of Impairment is used to describe the main features of autism. These are social interaction, Communication and language and rigidity of thinking.

The triad of impairment will tell you all about the most negative aspects someone who has autism may have. I am sure I don’t need to explain the meaning of our logo!

We are now working hard to get the Christmas card out in a timely manner so that it isn’t too late for those who want to buy it. I know some people are incredibly organised and buy cards early so  I can’t bank on everyone being like me and buying, writing and posting my cards on the last day of posting.

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Our Christmas Autism Awareness message is….Autism comes in all shapes and sizes! It will be on the inside left cover, so subtle but lets hope the message hits home.

We have all we need for the packaging so can post cards out to online orders. All our packaging and products will be environmentally friendly and recyclable.

Our Christmas card is a beautiful design which has a very subtle autism awareness message. We wanted our card to be able to sit happily alongside others whilst raising awareness at the same time. I hope you will love it as much as I do.

We have a face book page and have been working on the website. I am pretty much totally useless with anything on a computer so am waiting for expert support to make them look as interesting and professional as we want them to be.

Please keep an eye out for our Christmas Card design and if you would like to order some let me know, I promise it will be ready as soon as possible.

The website (when it goes live) is at http://www.spectrumofmisconception.com and the facebook page is Spectrum of Misconception.

I look forward to hearing from you (fingers crossed!) 🙂

 

 

 

 

 

Crowd Funding update and massive thanks!

Hi all, thank you so much for all of your wonderfully generous donations. We really appreciate it. We think it’s high time to let you know what our plans are and what progress we are making. After deliberating over the type of product we wanted to create, we felt strongly that it should somehow link closely to Zach’s journey and autism awareness more generally. For all the goodwill that is out there, there are still so many untruths, misconceptions, and myths that we need to work together on to dispel and change.

 

For that reason, we have decided to capture many of the mainstream misconceptions of autism and to do our best to make people think differently. We are doing this by employing a wonderful artist and illustrator to capture some of these concepts pictorially, which we will then be designing onto cards. The plan is for the cards to  be brought to Zach’s base where he and his team can organise and process orders, package the cards, and post them out to customers. We plan on opening an online store where people can buy the cards, interact with like-minded people, and give us their own ideas for future designs and concepts.

 

We have finalised the name of our product, and are putting the finishing touches on our logo and first two concepts. For our next update – coming soon! – we will upload some of these images to show you the process.  We would really like to get your feedback and input! We will also post some of our ideas to online forums to get feedback from other like-minded people in the hope that we can truly offer a product that will be valued by those who buy it. Finally, we’ll set up a Facebook group in the not-too-distant future to facilitate further discussion as we continue to develop our concepts and corresponding designs.

 

Thank you so much once more for your donations, and watch this space for further updates!

Carer Burn Out!

What happens when Carer’s burn out?! Who picks up the shattered carer pieces and tries to put them back together again?

Over the years it would be fair to say I have crashed and burned a few times, the degree of care tips slightly with something, a family bereavement or as at the moment my parents needing more support and I feel like I am in free fall to the bottom of a very deep hole.

The pressure of needing to be able to care at all times, 24 hours a day and 365 days a year is huge. If all those who care stopped to think about it, we would probably all be in free fall.

When it comes to caring for Zach we have a plan, and we hope we are heading in the right direction. We have the best support in place for him that we could hope for and he is learning and for the most part enjoying life.

We no longer have any overnight short breaks for Zach which was a step backwards for him and us. Zach had got used to spending a couple of nights away from us each week which was good for his independence and it gave John and I a little window of time to do ‘normal’ couple things, a meal or maybe a film.

However eventually we will find somewhere which will make a suitable Transition House for Zach and some other young people who are at a similar stage in their journey and he will start to have independence from us again. Although it will be a slow process it will be good to know that we are moving forward.

So I have my job caring for Zach, there isn’t a day goes by when I am not considering things which need to be put in place, looking for interesting trips out, making appointments, buying equipment or wondering what to put in his nutri-bullet that night.

I have my paid job, 6 hours a week as a Community Staff Nurse, I visit patients in their homes who are in need of nursing care. Many patients are at the end of their life and require Palliative Care, It is so important that I am able to reassure both patients and family and friends. My head cannot fall off.

My parents are both 93, Dad is 94 on Sunday and my Mum in September. I am incredibly lucky to have them both and physically they are both in good health.

For a number of years my Dad has been almost completely deaf and my Mum has had Alzheimers Disease. This combination makes communication very difficult, my Mum often struggles to find words and my Dad can’t hear them even if she can.

Over the past months things have become increasingly difficult for them both. My Mum has severe anxiety at times and my Dad can’t seem to find a way to calm and reassure her. Other days my Mum is lucid and cheerful while my Dad is tired out and sleeping. My Mum is lonely and feels that they never do anything interesting or laugh with other people and has days when she doesn’t want to get out of bed.

The Carer’s go in at 09.00 every morning and my Dad panics if Mum refuses to get up! With age, my Dad has become inflexible and change aversive which I get, but it is also understandable that some days my Mum doesn’t want to get up.

I have been getting more and more frequent phone calls asking me to go round and help, I can hear shouting in the background, speak to my Mum on the phone who sounds distressed and feel I have to go, most people would. The idea that my elderly parents are struggling to cope and I might just be able to calm things down is what makes me go. It sometimes takes a while but we usually get there.

It is strange how one day you are bumping (not gliding) along like a sort of busy Water bird, paddling madly out of every ones view and then all of a sudden you feel like a dying swan. You don’t feel able to bump along anymore, the mass of responsibility that you feel at making sure everyone else is doing okay completely overwhelms you and you crash and burn.

I am at the moment hopefully back on the way up from my latest burn out, I have organised GP and Social Work visits for Dad and Mum which I hope will be fruitful.

I have to acknowledge I am only human and I don’t have a magic wand. I can’t change what has happened but I can help to change what might happen if help is put in place.

John is as ever a massive support, as are wonderful friends and it certainly helps to talk.

Sadly this is all too common for Carer’s, the isolation, expectation and responsibility just weighs too heavy.  It is hard to know what the answer is, we can’t predict what will happen in our lives so can’t prepare and alter the course things take.

I am sending love and strength to all those who are Carer’s, you do an amazing job. It is probably the job with the least recognition and plaudits but one of the toughest there is to do.